Sometimes I’m in so much pain that I can’t sleep; I’ll just lay in bed, tired, but awake feeling uncomfortable. I usually take Tylenol PM to help.
For example, Brenna and I are absolutely different when it comes to sleeping. She goes to bed between 9 and 10 PM and I go to bed anytime between 11:30 PM and 2 AM.
When Brenna doesn’t have to work, she’ll wake up between 9 and 11 AM; and I’ll wake up every day between 6:30 and 8 AM!
It’s frustrating for Brenna because even though she’ll get lots of sleep, she feels like she didn’t sleep at all. And I just feel miserable every morning.
I yearn for the morning I wake up feeling refreshed. It will be delightful.
- Sleep only as much as needed to feel refreshed and healthy the following day, not more. Curtailing the time in bed seems to solidify sleep. Excessively long times in bed seem related to fragmented and shallow sleep.
- Keep a sleep diary. Write down how you slept each night and triggers that may have interfered with your sleep. Reviewing your notes over several weeks may give you insight into your sleep problems.
- Have a regular time to wake up each morning. A regular arousal time helps strengthen circadian cycling and leads to regular times of sleep onset.
- Use relaxation therapies. A gentle massage, deep breathing, and other relaxation techniques are all potentially beneficial to managing fibromyalgia and boosting restful sleep.
- Exercise regularly (but avoid exercising three hours before bedtime). Exercise may exert its beneficial effect by promoting better-quality sleep.
- Sound-attenuated bedrooms may help those who must sleep close to noise. Occasional loud noises — for example, aircraft flyovers — disturb sleep even in people who are not awakened and cannot remember them in the morning.
- Avoid long daytime naps. Extensive napping can interfere with nighttime sleep.
- Keep the temperature in your room cool. An excessively warm room disturbs sleep.
- Hunger may disturb sleep; a light snack of carbohydrates may help sleep.
- Avoid caffeine or alcohol in the evening. They both disturb sleep.
Ashley. 22. St. Louis, Missouri bewareofswoons
When were you diagnosed with Fibromyalgia?
Fall of 2003, I believe.
What kind of treatments have worked/not worked for you?
Things that have worked: 1) Getting adjusted. It sounds weird, but getting my back adjusted has really helped relieve pressure from my shoulder muscles. 2) Stretches. I’ve done regular and water physical therapy. They helped a bit, but I was really uncomfortable doing both. 3) Exercise. This is kind of both. It helps stretch out the muscles, but it also makes them sore later.
Things that haven’t worked: 1) Pills. I’ve been on so many different kinds of pills and muscle relaxers, and nothing helps. The only thing that’s ever worked is the sleep medicine I’ve been on since about 9th grade. 2) Acupuncture. I’ve had awful experiences with this. It’s expensive and it did nothing. And a couple times I walked out hurting worse.
Worst doctor experience?
Umm, I don’t think I really have a worst. I was 13 the year I was diagnosed and I went through a lot of doctors and treatments. I’d say the worst (I guess) was when I was in St. Louis at the children’s hospital and they took 10 vials of blood. I thought she took the needle out, but she was just changing the last vial. I looked down and passed out. Also, a lot of doctors thought I was faking the pain. That was really hard to deal with.
How does Fibromyalgia affect school and work?
It’s really hard to focus at school. And I definitely experience fibro fog, but I don’t ever tell anyone. I don’t have a lot of energy most of the time, so that makes it hard at school and at work. I also have a lot of shoulder pain at work as well, making it difficult to deal with.
How do you balance your social life with Fibromyalgia?
It’s really hard to have fun when it hurts so bad. My energy is usually low, but I try to put on a happy face, and try to put myself out there. I got myself into a bad place a couple years ago, and I’ve been trying to get out of it ever since. No matter how hard it is, I always try to make an effort. Unfortunately sometimes, the fibromyalgia wins.
Do you discuss your illness with your friends and family? Are they supportive?
I discuss it when I have to. I don’t like to talk about it because I don’t like admitting that I’m not the strongest person in the world. I hate being in pain and I don’t want to be just another person who complains all the time. But when I need help, my friends are there for me. I don’t think they really understand what I’m going through and what I mean, but they’re there when I need them. My parents are very supportive. My dad has been there every step of the way and he asks me about it all the time. Always making sure I’m okay.
What’s the biggest adjustment you’ve made in your life?
Probably finding a way to deal with fibromyalgia and college at the same time. It’s put a strain on my education, and my stressful education makes my pain worse. So it’s a really awesome cycle.
What has living with Fibromyalgia taught you?
Being in constant pain isn’t the worst thing in the world. And you can still have a life even if you have the syndrome.
What do you want to be when you grow up?
I want to save the world. I don’t care what job I have, I just want to help people and make a difference. But mostly in the environmental science realm of things. I’m going to be a scientist :)
Happy Anniversary Brenna Bear, I love you!
Thanks, I’m happy to help! I can’t tell you how much it means to know that I’m helping other people with Fibromyalgia.
Thank you so much! You just made my day.
Jon, 23, Seattle (Originally Upstate New York), livelongandpizza
When were you diagnosed with Fibromyalgia?
Summer of 2003
What kind of treatments have worked/not worked for you?
Well, the only treatment that seems to work for me is eating right, exercising, and laughter. I don’t always practice the first two. The treatments that never work for me are the ones where I’m taking millions of pills every day. I’ve never had much luck with medicine. I’m taking Effexor at the moment, but I’m weaning myself off of it because it’s not working.
Worst doctor experience?
I think this one, but, another terrible experience happened before I was diagnosed with Fibromyalgia. A neurologist ordered an EMG, and it happened to be the most painful procedure I’ve ever had. I didn’t really know what was going to happen when I went into the appointment, but when I got there I found out it involved needles and electricity. So, they stuck a big needle in different parts of my hands, arms, biceps, and thighs; they moved the needle around in my muscles and ran electricity through it. It hurt, a lot.
How does Fibromyalgia affect school and work?
I had to leave high school, get a GED, and I’ve struggled throughout college. Right now I’m taking a break from school so I can work full time and pay bills. Fibromyalgia really gets in the way.
How do you balance your social life with Fibromyalgia?
Sometimes, I can’t have fun. I love to go on adventures, but sometimes when my friends ask me to go out, I make some lame excuse and miss out on all the fun. I have to pick and choose my social activities.
Do you discuss your illness with your friends and family? Are they supportive?
My closest friends, yes, I do tell them about it because they’re awesome. Everyone else though, absolutely not; they either don’t understand, or don’t care, and I don’t have the energy to deal with them.
My parents are very supportive, but the rest of my family either avoided the subject, or thought I was faking it. So, yeah.
What’s the biggest adjustment you’ve made in your life?
I was suppose to graduate college last year, I’m still adjusting to the fact that I never had a normal high school/college experience. I just want an education!
What has living with Fibromyalgia taught you?
Fibromyalgia has taught me that I am awesome.
What do you want to be when you grow up?
I’m torn between something in education, business, or politics. So maybe a teacher, entrepreneur, or President of the United States.
This is Fibro Friday! You should be part of it.
